And It's About Time There Was Some Support For Cushing's!
Hi Everyone,
My name is Kate, and I am 25 years old. My whole journey with Cushing started when I was 15 but was not diagnosed till I was 18. In the beginning of my sickness after getting a cat scan they noticed that I had a cyst which took place as part of my cerebellum. Due to the size the doctors rushed in and did not pay attention to any of my other sypmtoms and just inserted a shunt right away. Two years later and still not feeling well we traveled back down to Philledelphia and started the diagnosis process again after many tests and mri's they spotted something on my pituitary gland. Due to the fact that I was a teenager they were not extremely concerned because many young girls and woman can have abysis on their pituitary. But the symptoms began to get worse so they decided to go in and biopsy.
After a nine hour transphanoidal/ deviated septum surgery the doctor came out and told my parents that I was fine, nothing was there. My parents where very upset easpecially due to the fact that the procedure was so long and they had a feeling that something was not right. From the day I left the hospital the symptoms started coming on full speed, weight gain, stretch marks, hair growth in all the wrong areas, extreme fatigue, you name it I had it. Everything a senior in high school wants to go through, I ended up buying four different dresses by the time I got to prom time, and I hate looking at the pictures today it just reminds me of too much.
My mom would not stop finding help, she knew how sick I was and knew I needed help. She contacted many doctors all over who offered her help, even one in Israel. But it came down to two that were the most willing to help and it was hard to find someone easpecially for someone under 18. My mom became in constant contact with a Marie Vance in Virginia. She looked over all my tests and definitly thought that something needed to be done as soon as possible. She gave us the option to travel to her or also recommended a Dr. Anne Klibanski in Boston. Both were a distance but we chose to take the trip to Boston and that is where I met my angel. The minute she saw me she knew I had Cushing's but many tests needed to be done to get a definite. After a year of every test under the sun and traveling around with a cooler in my trunk for my cool pee jugs they felt it was time for the last step before surgery, the Petrosal Sinus Sampeling (talk about fun)- NOT. Anyone who had one of these knows what I am talking about, the craziest part is when you wake up and can see on the screen them in your head oh and hear them too, but then they gave me more meds that made me loopy again. But this gave them the answer they needed and about a couple weeks later I went in for my second transphanoidal and came out tumor less. Yay! My levels that first night went from the 100's to the negative's I thought I was going to kill someone I had so much going on inside.
I left Boston a week later and started my prednisone therapy, but unfortunatly my adrenal glands did not wake up for a while so this therapy ended up going on for six years. Due to the fact that I live in NY Dr. Klibanski felt more comfortable with me having a doctor close to home, so I also started seeing Dr. Wardlaw at Columbia Presb. in NYC. I finally was able to come off my steroids and was diagnosed by both doctors as Cushing's Free.........
That was over a year and a half ago and I am sad and angry to say that my body is not working with me again. For the past couple of months I have been suffering from depression, crazy night sweats, nausea, terrible bruising, irratability, tiredness and more. These symptoms can fall under many things so I just kind of ignored them, but see I may want to ignore them but my doctors don't. On my yearly checkup up in Boston Dr. Klibanski did not like the sounds of everything and decided to run some tests. Come to find out my Cortisol levels are on the high side again :(. I went to my checkup a couple weeks later with Dr. Wardlaw in NYC and she explained how they are both concerned. So at this point I am in the fun test process syliva, UFC, blood tests and MRI's and then from there we will see. So I will come back and update later on but I am even more depressed the minute I even think that this horrible disease could be back.
Kate will be the subject of a future Live Interview in the Cushing's Help Voice Chat / Podcast series. More information as it becomes available. Archives will be available after the chat.
